THE first thing a mum wants to do when she gives birth is cuddle her new born baby.
But Rhiannon Atkinson had to wait five months until she could hold her daughter, Pippa, because she was born with no skin on her hands and feet.
Pippa, now one, has a rare skin condition called epidermolysis bullosa, which causes her skin to blister and tear whenever she is touched.
The condition has left Pippa without 90 per cent of the skin on her hands and feet and it has started to spread across the rest of her body.
Rhiannon, 30, is now able to hold her baby girl and knows how to bandage and clean her skin to reduce her risk of infection.
Rhiannon, from Cwmbran, South Wales, said: “As soon as she was born her hands and feet looked as though someone had taken her and dipped her in boiling water.
“They were red raw and she was whisked off to intensive care.
“Being told your child has an incurable condition is incomprehensible, it broke my heart.
“But then not being able to touch her, or cuddle her for five months was torture.
“I’d never known anyone with this condition so it was a complete shock when we were told it was going to get worse.”
Rhiannon and her husband Damian, 36, stayed in the hospital with Pippa for 23 days while medics decided the best plan of care for their baby.
Once she was discharged Pippa had to have her hands permanently bandaged for four months, and her feet bandaged for almost nine months.
“When she was born I couldn’t hold her for five months, she was always on a pillow,” Rhiannon added.
“Not being able to cuddle your new-born baby is the worst feeling in the world but it would have caused her too much pain.
“When we would touch her, especially her hands and feet, she would scream out in pain and you could see the true agony on her face.
“Every day I would have to bandage her hands and feet four times per day in five layers of dressing.
“But then when her blisters started spreading it became even harder to keep on-top of her cleanliness.”
Now Pippa has blisters on every inch of her body – on her eyelids, in her hair, her mouth and up her nose.
A PAINFUL SKIN CONDITION THAT CAUSES IT TO TEAR AND BLISTER
Epidermolysis bullosa (EB) is a general term used to describe a group of rare inherited skin disorders that cause the skin to become very fragile.
In people with EB, any trauma or friction to the skin can cause tears and blisters.
Types:
There are three main types of the condition:
- Epidermolysis bullosa simplex: blistering occurs in the upper layer of the skin. This is the most common type of EB, accounting for 70 per cent of cases, and tends to be milder than the other types.
- Dystrophic epidermolysis bullosa: blistering occurs below the basement membrane zone in the upper part of the dermis. DEB accounts for around 25 per cent of cases.
- Junctional epidermolysis bullosa: blistering occurs at the junction between the epidermis and the dermis (lower layer of the skin) in a layer of skin known as the basement membrane zone. JEB accounts for around 5 per cent of cases and is usually considered the most severe type of EB.
Cause:
EB is caused by faulty genes. In most cases these are inherited from one or both parents but sometimes the fault occurs spontaneously.
It is a result of not enough collagen being produced in the skin.
Treatment:
There is no cure for EB, but treatments aim to relieve symptoms.
Most treatments can be done at home, such as popping blisters with a sterile needle, applying protective dressings and avoiding things that make the condition worse.
“So we have to clean the house at least 10 times a day, because if dirt gets into her blisters it can cause infection,” Rhiannon said.
“Whenever she gets a blister me and Damian have to restrain her so that we can get the fluid out of her skin.
“That goes against every natural instinct in your body – having to hold your baby down and know that you’re hurting them.”
Now, as Pippa gets older, it is becoming a struggle to let her do normal things a girl her age can do.
Rhiannon said: “She is now nearly 14 months old and hasn’t started to crawl or walk yet.
“Because of her blisters the pressure on her knees or feet would cause too much pain.
“Every normal process takes ages too – it takes over 20 minutes to change her nappy because of all of her creams and lotions and 45 minutes to have a quick bath because we’ve got to get all of the scabs off of her.
“I have to change her clothes six times a day too, because her skin bleeds so easily.
“She wakes up at least four times every night screaming out in pain because she’s moved and hurt a blister or touched her skin in her sleep.”
But Rhiannon and Damian are starting to be able to cuddle Pippa as they know how to handle her condition.
“Because Pippa’s condition is genetic, I’ll never have any more children just because of the risk,” she added.
“I wouldn’t change her for the world and we are doing everything in our power to ensure she leads a long and happy life.”
Pippa’s family are now raising money to build a one-bedroom specialist extension to make looking after Pippa easier.
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